Friday, June 8, 2012

A Mashup of Discussions about Adoptions and Clefts

This post is really just a place for me to stick information that might help someone in the future, before I forget everything...  It is a copy/paste of discussions from yahoo groups, so if it seems disjointed, well, it is.


Our little guy had an unrepaired bilateral cleft lip and palate and came from Qingyang city, Gansu province and he used cheap, normal Gerber-like plastic bottles.
He actually had a Mead Johnson cleft nipple on the bottle he came with, but a
very large hole was cut in the nipple. This is makes it so that it doesn't
matter if you use a cleft nipple or a normal one, as long as you cut a big hole.
I took scissors and cut my nipples just like the one that Thomas came with.


Bottles were expensive in Gansu, so I'd take a couple. The Mead Johnsons I took
weren't great because they are so squeezy, and Thomas was so used to holding his
own bottle that he'd squeeze it everywhere. I don't have any Habermans, but
they might be kind of small. Most of our kids wanted about 10 oz. per feeding,
5-6 times a day, so the large bottles were good. A little dish soap and a
bottle brush are good to take, too.

Chinese formula has scoops that are a different size than american formula
scoops, so make sure you read the package. Thomas would cry like crazy if his
bottle wasn't the right proportion of formula to water. He cried if it wasn't
really really HOT. We carried a thermos of hot water everywhere. We used half
boiling and half room temp water to get the right temp. At first he even cried
if we tried to hold him, or even if he was on a soft bed when we fed him. He
wanted to be on a hard surface, flat on his back, holding the bottle himself.
Eventually, we convinced him to snuggle and make eye contact and all that good
stuff.

Our guide in Lanzhou showed us exactly which
formula to buy in the store. He also told us to give the babies water with
honey in it, but we didn't do that... :)


If you need to take perfect hundreds for the donations and fees, you might want
to start collecting them now. We had to visit several banks several times to
get enough.

We traveled with 4 people- 5 if you count our new son, and I think we spent
about $1300 US in 16 days, and we shopped a lot.

The hotels we stayed at only allowed you to convert $200US each day, so the
first couple days we made sure that at least someone converted every day. They
can be picky about the condition of the bills too, sometimes.


Hi! I can understand this anxiety- I'm on my 4th toddler and still having to
read and learn and experiment. This is my first adopted child, though.

I will tell you that your question about Gotcha day is a good one. Our little
guy has been home 2.5 mos. and he is great- smart and making lots of progress,
and funny and sweet. On Gotcha day, if I hadn't been prepared for how delayed
kids can be when they have been in an orphanage for 2 years, I might have been
panicked about his behaviour. Also, he had deep grief for 3 days, which caused
him to refuse to eat, turn away from us, sleep a lot, and act like a limp rag
when he was awake. On the third day, he perked up. If I hadn't read lots of
blogs that talked about this, I wouldn't have understood. I totally agree with
the advise to keep reading and talking to other moms. (Yes, I think you are a
mom now....)

Getting a referral is more stressful if you haven't read about which doctors
will review files, and it is also helpful to read blogs of parents who have had
to make difficult decisions about accepting referrals. It can be a big step of
faith.


Very true about lying flat, not being held to take bottles. All the cleft
affected babies from our group would only take bottles laying flat on a hard
surface, holding the bottle themselves, with no one touching them at first.
After 2 days, I started getting serious about holding our little guy while he
ate and he adjusted.

He also likes his formula pretty hot, and cries if it is too watery or cold. We
had to carry a thermos, so we had a ready supply of hot, potable water in China.
We were 4 people plus baby, and were going through a gallon of bottled water per
day.

Thomas came with a cheap hard plastic bottle with a Mead-Johnson nipple, but the
opening was enlarged a lot. A lot. Cutting regular nipples with a very big
hole has worked fine for us too. Might want to pack small scissors that are
very sharp, and a few nipples to experiment with.

Our little guy doesn't drool and doesn't make a mess when eating bottles at all.
He has never been given solids at 27 mos, and really hates having anything but
formula put into his mouth- even watermelon juice. We've been home 4 days, and
he's gained 1.5 lbs in a week, but won't eat solids at all. I see therapy in
our future...

At first, he wouldn't let us touch his head or face at all, but after 2 days, I
started gently rubbing his arms, legs, and tummy and by day 4 he was letting me
rub his head and cheeks.

His front, top gums are always exposed, so they dry out and scab over unless you
put lotion or something on them. I've been using aquaphor, which works well.
He still hates when I touch his mouth.

I was nervous about washing bottles in China. I used antibacterial dish soap
and tap water, and then rinsed them with boiling water. I didn't bring a bottle
brush, but wish I had. Also, I wish I'd brought a formula dispenser , because
trying to get 8 little scoops into the bottle with a hungry baby watching isn't
great.


We are going through this right now- home 3 mos, lip and palate repaired one
month ago. Our little guy is really averse to anything but the bottle. We are
making progress. After surgery, I syringe fed him for 2.5 weeks. Once he was
allowed back to the bottle, he refused it. It took a week or so to get him to
accept the bottle again.

Last week, I started putting stage 2 baby food in his formula, and at first he
didn't know what to do with that (moving tongue, etc). I kept squirting it into
his mouth with bottle/syringe so he was still getting his normal 50 oz of food a
day, and he started catching onto swallowing thicker stuff. He also decreased
in drooling, so I think he was learning about swallowing. He had not drooled
before surgery.

Just today, I put in undiluted baby food- squirted little drops from a pouch,
and he didn't know how to move that with his tongue. I'll keep doing that until
he figures it out, I guess, but I'll keep him on the bottle as much as usual
until he really gets the hang of eating.

Before surgery, I also had a small bit of luck with getting food on my finger
and swiping it in his mouth, since he's afraid of spoons and cups.

Also, 3 weeks after surgery, I was allowed to brush teeth with a finger brush.
Tonight, after a week of fighting and screaming and fear, he opened his mouth
willingly and let me brush his teeth. Wow.

We also play a game where we both stick out our tongues. I try to touch his
tongue with my finger, which he's afraid of. Then I try to get him to touch my
tongue, which he's afraid of. Anything to desensitize him to oral stuff. I
make all my other kids stick their tongues out and let me touch them with my
finger, so he can see it isn't scary... We all laugh like it's really fun. He
looks at us like we are crazy....

What can I say... he's a smart kid...


When my little guy had palate surgery, he ONLY ate from a bottle and
couldn't/wouldn't do anything else. His surgeon is adamant about no bottles for
2 weeks after lip and palate surgery. Maybe it would be different with just
palate, but even after 2 weeks the bottle did make his lip swell.

We ordered the tender care feeder from www.snugglewraps.com and syringe fed him
for 2 weeks. It was awful at first, because he has serious oral aversions.
He's back to the bottle now, and learning to use his new mouth to swallow baby
food too.

Just for me, I plan to keep using the bottle for as long as he wants to- maybe
another year or so.

The IA doc who reviewed our referral was very concerned about head measurement-
he said it was so small that our son probably had cognitive issues. Now that
Thomas is home, he has a HUGE head- not small in any way, but very flat in the
back.

You may not be able to tell much about "severity" from the referral paperwork or
photos, either. Our son's cleft looked huge, but turned out to not have some of
the problems we expected. You can't tell how speech will go until you hear the
child and spend time on it. You don't know how the environment in the
orphanage/ foster care has impacted the child's development. I'd guess each
individual child's personality would be the biggest factor, and you can't figure
that out from paperwork either. It really feels like jumping off a diving board
into the unknown, doesn't it?

It took us two months of staring at our son's file to jump. The cleft wasn't
the issue that worried us, but the delays that were obvious but not labeled as a
"special need", and the head size in his file which was small and concerned the
docs. It was plain wrong- his head is HUGE, not small. Now that we've had him
home a few months, I think he will catch up his physical delays. I'm still not
sure how significant his speech delays and emotional delays are going to be. 
I'm pretty sure he's smart- he figures things out really fast. He's bonding
very well.

When we were sitting there for 2 months too long, staring at the file, we just
came to a point where we had to decide to adopt him or wait for another
referral. I feel really ashamed to mention how long it took us. We had to get
PA before we could proceed with the homestudy and dossier, which is a little
unusual. We were scared and just not sure. We just asked the Lord to give us
PA if he was meant to be ours, and have China reject our request if not. As
soon as we decided and sent in our LOI, something just happened to my heart. 
The thought of not bringing him home haunted me. China could have said no to
us- we needed a waiver.

Once I started praying for this child, he became mine. God put him in my heart
with the same, fierce motherly love I have for the others. Maybe a little more,
because I had to fight a little harder for this child. I really stopped caring
if he was ever going to be ok, because he was MINE. He was certainly going to
be better off as mine than not mine, even if his delays persist. I am better
off as his mom than I was before, because the "not knowing" has driven me closer
to the Lord. The long, year wait to finish all the paperchase was excruciating.
I really learned something about how prayer really does work- that I could do
something for my child that really had an impact on his life, even though I
couldn't hold and teach and comfort him for that year. I still cry when I look
at him and see how far he's come and how sweet he is after all he's been
through, and I'm not a crier. He really brings joy to our family.

My dad, who may have thought we were a little crazy a year ago, keeps going
around saying, "He's so cute! Why doesn't everyone adopt one!"

I totally sympathize with your position at the end of the diving board. May you
have wisdom to know when to jump and when to wait.


I am a believer in the benefits of probiotics. When we have to do antibiotics,
or if someone gets thrush or has stomach problems at our house, I get a
refrigerated, powdered children's probiotic at our local health food store.   You get relief from the yeast growth in the mouth, or diaper rash or whatever in about 2 days, but need to keep taking it longer.








3 comments:

  1. Thank you for posting this! I've been feeling very anxious about bringing home a child with bilateral cleft L/P. These tips are so helpful. Plus, knowing I'm not alone in my anxiety about the future. We don't even have a proper referral yet, but hope to this month.

    Your little guy is absolutely precious! And beautiful!

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    Replies
    1. Thanks! Your little ones are beautiful too. I can't wait to see your new blessing!

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  2. Hi Maria,
    You recently commented on my blog about the NEX. Thanks so much! I'm just curious about people who comment and read my blog. Obviously we have similarities, WV, Military, adoption, cleft, and homeschooling. I've read through a little on your blog and you have a lovely family. I'd love to hear about your adoption and how you found my blog. My email is clmnva@yahoo.com

    ReplyDelete